Sunday, September 23, 2012

Guest blogger- Introduction to Ido


As my book gets closer to publication, I will be sharing some essays written by people who know me to introduce me to those who do not. The first is by Tami Barmache, lovely friend, and mother of a son with autism.

I remember meeting Ido’s mother, Tracy, at a mom’s night out. She was describing that while Ido was unable to speak, he was communicating by pointing to letters on a letter board. I had never heard of such a thing, was fascinated and wanted to learn more. I, too, had an autistic son who was not able to speak.
As the mother of a child who often cannot communicate his thoughts to me, watching Ido on the letter board, and now his iPad, has always been nothing but a pleasure- liberating. It is sometimes difficult to reconcile the differences between how Ido presents himself to the world, and the words and ideas that he spells out on the letter board or keyboard. There is something that tugs at you and says, “It just can’t be.” But then you see him, over and over again, spelling out his thoughts that are clearly his. It is not Ido’s job to prove himself to us. His challenge of remaining in control of his body to the best of his abilities is enough to face every day. We are the ones who have to find a way to overcome that incongruence, and kick through the barriers and limitations that skepticism creates.
Ido has many strengths, but the one that stands out for me is his perseverance. He says that his mom was relentless in her efforts to bring communication to his world. He was along on that ride, and was hungry to learn and communicate. He is strong, determined, and wise beyond his years.
I would imagine that Ido would say his greatest challenge was living a life without communication. Now he is able to convey his thoughts, feelings, struggles and successes. He has the ability to find his way through difficulties with the help of those who love and believe in him. He continues to face other challenges, such as gaining better control over his movements, and reaching other families and professionals.
So little is understood about autism in general, and specifically about individuals with limited communication.  Ido is very articulate, and has a vivid and clear way of describing his experience with this very difficult disability. With these insights, we can go beyond all of the technical terminology and the need to “fix” everyone. Ido can give us a window into the world that we, as parents, long to know so much more about. Professionals owe it to their students, clients, and patients to listen to what Ido has to say.
One day I was sitting under a beautiful tree in a park with Ido and his mom. I was frustrated and confused about what might be going on with my son. I always turn to Ido as my “go-to guy” in order to get a little bit of insight into my little guy’s world. After patiently answering some of my questions, Ido spelled out on his letter board: “Autism is a deep pit. Don’t give up.” I think of those words regularly and they give me strength. I will never give up. Thank you, Ido.

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